Thursday, 23 February 2012

It's Sunday morning and I am running and I am absolutely bloody freezing.

It is the kind of morning when, if you are not a runner, you might pull on boots and a hat and walk the dog while exclaiming at the freshly-washed skies and the crispness beneath your feet, before letting yourself gratefully back into a warm house with a tingling numbness in your lips and nose.

It is the kind of morning when, if you are not a runner, you might meet a friend for a bracing stomp up a hill in the countryside, cut short with exclamations that it's actually really very cold, and followed by a gravy-splashed pub lunch and a snooze in front of the fire.

If you are not a runner, you will sample this bright, icy day with pleasure made all the more intense for knowing that you need not be out in it long.

I am a runner, so I am still out in this day. I am bowed into it like a penitent waiting to be told of absolution, bearing the lash of a bitter wind as I move my lips in silent prayer to make it stop soon.

At least I am not alone. Alongside and in front and behind me a mass of people also bob and groan -- 9,999 other people participating in this half-marathon along the ruthlessly exposed seafront.

It is becoming apparent that I have got this all wrong. I am not enjoying myself. I have completed around a third of my usual weekend run and yet I feel off kilter, off the pace, stiff and creaky. There is a recurring, uncomfortable twang at the top of my left leg.

I know the reason I have screwed this up: I am running too slowly for fear of running too fast. The last time I ran a half-marathon I got terribly excited half-way through and then almost collapsed before the finish, spent from a four-mile sprint in the middle of the race when the atmosphere and the crowds and the sense of imminent achievement soused me like cheap wine and left me staggering and gurning at the end of the party.

So this time I started at the back. Way, way at the back. Partly, I think, because I was also overawed by the companion with whom I walked to the start line: the husband of a friend who runs this race regularly; a mass of muscle and sinew who is used to knocking off one of these events in around an hour and twenty minutes and is so tough he's wearing a singlet and shorts today.

Meanwhile I am wedged behind two women who have chatted non-stop since the start (the fact that I am not out of breath either is not really a comfort at this point) and a man who is dressed as a tap. We pass only occasional supporters -- we are way out past the marina at this point and the crowds are thin here. At one point we all trot past a tall woman standing on the verge who is wearing a hat like a chimney stove and waving a giant union jack and occasionally honking an ancient brass horn to encourage us onwards. Poop, poop! she honks at us beaming, then spots the man at my side. "Come on!" she shouts in plummy tones. "Come on Mister -- what are you? A pipe? Come on Mister Pipe!" Poop, poop! Beside me I can see the man's face tighten with irritation.

At this point I check myself and look at my watch. I am running alongside a man in a tap outfit and it has taken me approximately ten minutes longer than it should have to complete six miles. I am going to have to get a move on at this rate if I am to come anywhere near the time I completed in my last race.

I lengthen my stride. I have trained for this. I should not be letting this race frighten me into submission.

As soon as I start running properly my body starts to relax and my mind tightens up: I switch on my ipod to drown out the little anxious hand-wringer inside my head who is saying -- you shouldn't be doing this, you might not make it, what if you run out of steam like last time?

Tra la la, I tell it, and turn the music up a bit louder.

At this point I spot a woman in front of me who is wearing a co-ordinated pink tracksuit, leggings and giant headphones. She has a massive rope of hair down her back and is accompanied by one man who has "COACH" emblazoned across his back, and another who keeps sprinting ahead to film her with his phone. I draw alongside and see a face with thick dark Disneyesque lashes and a hue of orange never found in nature.

I think: I can run this race faster than Katie Price, and I speed up and pass her, leaving both her and the grimacing maiden aunt in my head, flapping her hands in agitation, far behind.

By now I'm running past beach huts in primary colours and smiling families waving and cheering -- and look! there's mine, briefly, looking cold and as though they'd like that gravy-splashed lunch some time soon -- and I've got three miles to go and I'm passing people left and right and it doesn't hurt. I can feel the muscles in my legs and the strength in my arms as I push on and this is new, this is not what it felt like before -- this is a stronger, fitter me.

Two miles on and my legs feel tighter and warmer now and I am becoming more conscious of the deep gulps of air I am taking. I need to adjust my stride. I hesitate for a moment then test out a faster pace: it works.

As I run the last 800 yards and bound over the finish line I feel like yelling with joy and frustration. I complete the race in exactly the same time as my first half-marathon but the two experiences could not be more different. This has been a lesson in learning to trust my ability: the training is working. I decide to sign up for a 20-mile race in four weeks' time. I need to try again to get the pacing right. London is in 8 weeks.

Later, when I am showered and dressed, I present Grace with my medal: a chunky pewter square strung on a red ribbon which reads: "FINISHER".

She looks at it in dismay then looks up at me and asks: "Mummy, did you come last?"

"No," I tell her. "No chance."

Grace Under Pressure: going the distance as an Asperger's mum, will be published by Piatkus in October 2012

Monday, 13 February 2012

One morning last week I stood in the reception of my local council offices waiting to deliver a large brown envelope packed with evidence that my daughter needed help.

It had snowed overnight and as I waited there, the thick entrance doors sliced open and closed with a slushy mechanical wheeze, conveying blinking, wet-faced employees into the building, along with runnels of stained water that made patterns in the cheap carpet underfoot.

I looked at the succession of people passing me, shaking their hair and the snow from their boots, and wondered if any of them would be making the decision about Grace's future: the decision that would make an entirely different life for her. I had asked the receptionist to see Grace's case worker and been told that he was not at his desk but that a message would be left for him to come down as soon as he appeared, which would be shortly.

In the peculiar business that is getting a statement (if you don't know this joy, you can read a summary here) I was about to hand over a mountain of deeply personal reports and assessments, which in clinical tones told of my daughter's mind and heart and self, to a man I had never before met, who would then take them away, show them to a panel of more people I had never met and would not know, then write to me a few weeks later to tell me whether this group of anonymous deciders had been sufficiently moved to grant our request for additional support.

A yes would mean the money for an assistant to work one to one with her in the classroom and to help her navigate the social minefield of the playground. It would open the door to the best secondary school in the area, with its team of support workers and autism-friendly teaching methods and its drama and art studios where Grace could thrive and bloom.

A no would mean the dull continuation of daily struggle and bullying and constant barely-suppressed terror at what life at the local comprehensive would entail. A no would mean a long, long legal battle to change the LEA's verdict. A no would mean living even deeper in debt as we scrambled to pull together enough money to pay for some help ourselves.

So I wanted to see this man, the only face in the chain that I was indeed likely to be allowed to see. We had spoken on the phone a couple of times, most recently two weeks ago when I rang to say that the school and I were working together on preparing our second application attempt and to ask if I could bring it to him in person to meet him on this date. He had agreed.

I looked at the clock on the wall. It showed me that ten minutes had passed since my arrival. I sat down on a hard felt sofa and removed my hat. My stomach was knotted and my hands tingled slightly with nerves. I smoothed the surface of the envelope, feeling its hard bulk under my fingers, and hoped for the hundredth time that we'd got it right, that we'd done enough. In the last few weeks I had called upon everyone I thought might be useful to seek advice on the final presentation. To the obvious dismay of the school special educational needs co-ordinator, exhausted from weeks of typing and collating material, I had asked her just the previous morning to rewrite sections of it along the suggestions of some of the experts I had asked to comment on the draft version. Ignoring my discomfort I had also at the same meeting edited spelling mistakes out of the headteacher's letter and asked for some other changes to be made. As late as the previous evening I was still emailing and calling the school to check the final version. When I picked up the final package for delivery I mentally congratulated the staff on still being able to raise a smile when they saw me. I pushed away the memory from the previous week when I discovered their copy of the code of practice -- the special educational needs bible for schools -- was dated 1994, and unread.

More council staff walked past me, the laggards now, tugging off scarves and checking their blackberries as they passed. I dug my phone out of my pocket and checked the time. Seventeen minutes had passed.

At that moment a tired-looking woman in a smart skirt and jumper approached me and asked if I was waiting for X. I said I was. She told me that he was very busy and had sent her to collect my package rather than coming down himself.

Numbly I handed it over and watched her take it from me. She turned to go and in a rush I said: "I really hope it works." The woman looked slightly embarrassed and nodded.

Then I put my hat on and walked back out into the snow, so bright it brought tears to my eyes.

Grace Under Pressure: going the distance as an Asperger's mum, will be published by Piatkus in October 2012

Monday, 6 February 2012

Right now, concentrate. Put that down, whatever it is and pay attention. You need a what? It's alright, I'll wait. Perhaps a cup of tea would be nice, yes.

Ok, so you're ready. Yes, I'm still here. Now, I'm going to tell you about something called a statement of educational needs and what it's like trying to get one. No, come back. No really, you do need to know this. It tells you everything about the way the government sees your child. And it tells you a lot about the pain and required patience of parenting a child that doesn't quite fit in.

So. Imagine your child is not keeping up in class. If you're lucky her teacher will a. notice and b. care. Often if steps a. and b. are met then your child may be put on something called School Support, or School Support Plus. I don't know why we use the term 'put on' -- they're not drugs -- but we do. These terms mean that your child will receive a number of extra hours' help a week, usually on a one to one basis, with the aim of helping them catch up in the areas where they need extra help.

If after this has happened your child is still struggling and/or in distress then the school may suggest talking to an educational psychologist. (Unless your child only admits problems once he or she gets home in which case the school will tell you there's nothing wrong regardless of any further incidents, tra-la-la fingers in our ears, we can't hear you.)

At some point the educational psychologist will assess your child and may then decide that there's an underlying diagnosis to be made which will enable everyone to get the correct help for your child. You're told this will be the next step.

Now wait for a bit, probably several weeks. Or it could be months. No, I don't know why. No, I don't know precisely how long. Yes, you can ask. People will talk about "resources" and put the phone down on you.

Eventually you'll get a date for an assessment. This will be a couple of months further on again. When you turn up for your assessment you may also get the diagnosis then. It may happen that quickly because by now your child will be fairly upset or switched off entirely or generally disruptive. Let's pick a diagnosis -- let's say autism. You may be told this on the day, or you may be told this a while afterwards on the phone. You might get a letter. Or you could wait for a few more weeks and make a few more phone calls before someone will tell you.

Ok so now your child has a label. Congratulations. You've now been set apart from the mainstream, and if your child goes to an academy or any school which prides itself on results and academic prowess you may find that it is suggested you leave and go somewhere else more appropriate. Or you might just find that the school doesn't know what autism is and ignores the diagnosis. Or you might find that the school does want to help but doesn't have the resources to do so. They will start talking about something called a statement. If you're in this last category, congratulations. You have won the Golden Ticket. Really. You have. But you're a long long way off from claiming any prizes.

By now it's probably at least a year since you first had that conversation with your kid's teacher about something not quite being right. It may be several years since you had that first conversation with your kid's nursery teacher about something being not quite right. Feeling a bit uneasy and anxious? Get used to it. Camomile or mint tea are quite calming. So is running massively long distances. Or you could just open a bottle of wine. But be careful. You've got to be able to concentrate in the morning. You've got to be able to concentrate all the time in fact. You can't ever, ever not concentrate. Ever again.

So now you and your school have to ask for extra help from the local authority to get this thing called a statement of educational needs, which is basically like bestowing a bursary on your child, to be spent by whichever school they are at on whatever help they need. Take a deep breath. It's about to get even more complicated. Unless you're loaded and can just pay for a classroom assistant to be with your child all day, and give private tuition in the subjects they don't understand: hand over the cheque and everything is sorted. No, didn't think you could. Ok, so now you are in a process in which you ask for a statutory assessment.

There can't be something good on the telly, it's 4.30 in the afternoon. I promise I won't take much longer.

A statutory assessment is an investigation carried out by the local authority to find out what your child's special educational needs are and what provision is needed to meet those needs.

This is where you have to pay close attention. Are you listening? In order to request a statutory assessment to find out what your child's special educational needs are and what provision is needed to meet those needs, you have to first find out yourself what your child's special educational needs are, and ask loads of experts precisely what support your child should be getting and then ask loads of teachers to try to provide it. This will take about another year. Only when you have detailed precisely what your child's needs are, what resources your child needs and have bullied/coerced/begged the school's teachers and special educational needs co-ordinators to provide as much of that specialised teaching as is possible, can you then apply to the council to please establish what your child's special educational needs are and what provision is needed to meet those needs.

There is a special trick to this application. Get it right, and the council will agree to a statutory assessment of your child. Get it wrong, and they will throw out all of your paperwork and assessments and requests on the grounds that you haven't proved your point. I think (but I'm not sure) that you have to show there's a problem that you've tried to fix but that you can't quite do it. Woe betide you if you haven't tried hard enough, or if you have tried too hard and look like you may be doing ok on your own.

Anyway, no-one quite knows what this special trick is. Where I live, educational experts give workshops to parents on how to apply for a statutory assessment. They are not allowed to give them to teachers or special educational needs co-ordinators in schools. I have no idea why, but I suspect it's to make sure we don't all get together and figure it out. There's not a lot of money in that pot for extra help: they can't have hordes of people coming at them with watertight cases. So you have to really focus intensely on all the worst aspects of your child, all the most negative, upsetting, miserable experiences and difficulties they have. It's a bonus if you can get a doctor or two to say formally just how very fucked up they are.

So now you've sent off your letter. By now your child may well have just given up on school. He or she may be being bullied because they are so clearly separate from the rest of the class. He or she might not be sleeping. Perhaps he or she is having panic attacks. Excitement about new ideas and learning will have gone entirely out of the window.

If you're very very very very lucky and you discovered what that special trick was, you will be told six weeks later that the local authority thinks you have made a good enough case to assess your child and see if/whether/what kind of special help they need.

So then the local authority will begin its own process of evaluating your child and his or her needs. It will do this by asking all the same people that you asked to assess your child again. It will ask all those people to write the same reports that they already have. And it might ask for a few more, just in case.

This process takes six months.

At the end of it they can say no.

When that happens, you have a right to appeal.

How much do you know about the legal system in this country?

No, come back ...

Grace Under Pressure: going the distance as an Asperger's mum, will be published by Piatkus in October 2012

About Me

Mother, marathoner, campaigner: I started this blog with my elder daughter when she was diagnosed with Asperger's Syndrome and both of us were struggling to find support. I wanted to give Grace a voice and show the courage and humour with which she overcame challenges. I also wanted to raise awareness about autism, and to that same end, started long-distance running in support of two autism charities.
I also campaign for diversity and inclusivity as leader of the Women's Equality Party, which is a new non-partisan force in British politics uniting people of diverse ages, backgrounds, ethnicities, beliefs and experiences in the shared determination to see women enjoy the same rights and opportunities as men so that all can flourish.